After the Biopsy: The agonizing wait

Although I am not very religious, I thought I’d start this post off with a psalm that I remember as a child. My brother had this psalm in a frame on a wall by the window of his bedroom. I’m not sure what my beliefs are. Yet somehow the words below resonate with me.

Psalm 23: Footprints

One night a man had a dream. He dreamed he was walking along the beach with the Lord. Across the sky flashed scenes from his life. For each scene, he noticed two sets of footprints in the sand: one belonging to him, and the other to the Lord. When the last scene of his life flashed before him, he looked back at the footprints in the sand. He noticed that many times along the path of his life there was only one set of footprints. He also noticed that it happened at the very lowest and saddest times in his life. This really bothered him and he questioned the Lord about it. “Lord, You said that once I decided to follow you, You’d walk with me all the way. But I have noticed that during the most troublesome times in my life, there is only one set of footprints. I don’t understand why when I needed you most you would leave me.” The Lord replied, “My son, My precious child, I love you and I would never leave you. During your times of trial and suffering, when you see only one set of footprints, it was then that I Carried You.”

I never understood how much the agony and stress of the initial news of my dad’s cancer would take over my life. A perpetual, never-ending tension headache was yanked around my forehead like a rubber band for weeks. My normal happy self seemed to be a ghost of the past. The only thing that seemed to ease my pain and make me forget was my nightly dose of wine. I’m not proud of the fact I needed alcohol to make me feel better and make it all go away. But it worked at least enough to get me to sleep at night. For me, that was all that mattered.

When we left the hospital after my dad’s biopsy, I was shocked how unprepared we all were for the aftermath of the surgery and more so, how little my father’s doctor had prepared him for what to expect. You would think the urologist would have spent time educating my father on the details of the surgery and its aftermath. You think he would have told him how terrible he would feel after the anesthesia wore off and the pain of the surgery itself set in. More importantly, you would think that my dad’s urologist would have informed him that he would be going home with a catheter inserted into his bladder for the next three days.

Not at all. He told him none of that. Instead, my dad thought it was a simple procedure and he would be coming off the biopsy in time to bring his wife and daughters out to dinner. How we were misled.

When we picked my dad up from surgery he could hardly walk and was completely out of sorts. He had to be pushed in a wheelchair, a sight in itself I was unprepared to see. He had his catheter enclosed inside a blue and white speckled canvas bag with a tube leading in, filled with dark red blood. I thought I’d pass out at the sight of it all. I would realize after three days, I would never get used to the bloody tube leading into the bag.

We brought him home in silence, each one of us sinking in our emotions. It was an immensely difficult day and the night was only going to get worse. My mother was still recovering from her own surgery, a shoulder replacement in her right arm, just a week before. There was no way possible she was able to help my dad. Thank God, my sister and I were there.

The first night home was a blur. My sister woke me up every two hours to help my dad drain his sack of blood. He was too out of it and in pain to do it himself so we had to help him. It was awful. It was the first time in my entire life that I had to take care of my strong, amazing dad. It felt incredibly strange, as well as incredibly sad.

I don’t think I ever truly fell asleep that night drifting in and out of far off dreams that were mostly bad. I worried profusely about my dad, the man who has always been placed on a pedestal in my life. The man who inspired me, encouraged me, supported me, motivated me, loved me and helped me become the person I am today. How could he be sick?

The thought of losing someone I love so incredibly much scared me more than anything I’d ever experienced. I felt so alone and lost. I didn’t know how I’d ever survive or be happy without him. There was no way he could die. No way. I didn’t know how I would ever make it if he did.

———-

The next couple of days were equally hard. My rubber-band headache continued around the clock (except of course when I was drinking). I found it difficult to even function. To think. To be.

Yet the power of my family’s love also surprised me. Despite the stress, anxiety and concern we all had, our love for each other kept us going. It kept us laughing even though we were crying inside. It kept up talking even though we were suffering. It kept us together, and it was enough.

When Thursday night approached and we still had no news on the results of my dad’s biopsy, the pit in my stomach began burn. It has been 48 hours yet silence. Earlier that day, my mother called the clinic to check on the status of the biopsy. Yet the office staff was standoffish and unwilling to give us any more information besides the standard , unemotional “They haven’t arrived yet. As soon as they do we will call.” The uncaring attitude of the office made me feel like crap. Didn’t they have a heart? Didn’t they understand that this was my dad we were talking about? My dad who I love beyond words?

My sister and I both had scheduled our flights for Friday believing based on what the doctor had said, we’d have the results. We wanted to be there with my parents more than anything when we received the news. Yet, Friday morning came and went with agonizing slowness and silence. Meanwhile the hole in my heart was beginning to widen and the suffering became unbearable. I was falling, falling, falling down into a place of darkness that I didn’t want to go.

By Friday afternoon, reluctantly I had to board the plane and fly back home to my own family, feeling more distraught and upset than before. The day passed once again in agony yet by 5 o’clock it became obvious that we were not going to get the results in 48 hours. We were going to have to go through an entire weekend not knowing. An entire weekend of sleepless nights, tension headaches, burning stomaches and emotional turmoil. I had no idea how on earth I would make it through.

—————-

I arrived home to my loving family yet felt like I was barely there. The anguish had taken me over and I felt like at any moment I was going to explode. Nothing seemed to make me happy nor settle my nerves. The wait was tormenting me and becoming an agonizing hell. I felt like the world around me had stopped. I felt nothing except a deep, dark pain.

The days moved at a snail’s pace until finally it was Sunday night. Monday would have to be the day we would hear. It was almost a week after the biopsy and the doctor had said “Maybe Friday, Guaranteed Monday“. Yet I had lost all faith that we would ever get an answer.

I spent Sunday night tossing and turning, desperately trying to fall asleep. But sleep evaded me and instead I tried with all my might to push those awful, scary thoughts out of my head. It felt like I was being suffocated. I could barely breathe.

Finally, I fell into a restless sleep around 3 am and rose four hours later with a huge feeling of dread. This was the day. Two months of questioning, anxiety, fear, and hope, would be answered. It was so overwhelming I was beside myself.

I went through the day in a trance. I felt like I could hardly breathe. Every time the phone rang, my heart stopped. The time passed and I did my best to keep busy. As much as I wanted to lay in my bed, fully under the covers and hide, I knew I had to face the day. There was not a damn thing I could do.

The day passed from morning to afternoon and still no word. I felt like I was going to explode. I didn’t know how much more I could take without having a complete meltdown. My dad had several calls into the office to check on the status of the results yet once again, there was nothing. Five o’clock came and went. Then six, seven and eight. Still no word. I was beginning to believe we would never find out. I felt like the doctor was playing tricks on us, trying to torture our souls.

I had no idea how I would ever ever survive another agonizing night without knowing.

Then, at 9:15 PM I got a call from my mom. The doctor had called yet my dad was briefly out of the house with my sister picking something up at the store. He informed my mother that he had the report in his hands but could only give the results to my dad. He would call back in ten minutes.

I waited by my phone and waited and waited and waited and waited.

I called my mom. No word.

“Did he call yet”?

No.

I waited by my phone. Waited. Waited. Waited and waited.

I called my mom again. “Did he finally call”?

No……..

——-

You would think that any doctor with a heart would understand how we were feeling and how desperately we wanted those results. We were being torn apart inside. It was hell.

By 11:30 pm, when the wait had become unbearable and I was resigned that he would never call, my phone rang.

Did he hear? I whispered.

Yes, my sister replied.

And?

He does have bladder cancer yet the tumor has not entered the bladder wall.

It was the best prognosis we could have had. It meant he went from being on his deathbed with a hell of a fight in front of him to having options.

The words were so overpowering that I lost it and sobbed for hours. I let out all the anguish, fear, anxiety, agony, anger and darkness that I’d felt for over the past two months of this journey. A journey that was unbelievably mishandled by both my dad’s primary care doctor and the urologist.

For months I’d been replaying my father’s doctor’s words, “I highly doubt you have cancer, it is most likely a urinary tract infection” and instead of looking further, his symptoms were continually treated with antibiotics. Even I had googled “blood in urine” and saw that cancer was one of the main causes. Of course, I am no doctor but to think that we wasted almost three months treating his symptoms with antibiotics and never once even took the next steps to ensure it wasn’t cancer, makes my stomach sick.

Furthermore, the dreadful wait and lack of caring and education by my father’s urologist furthered my disgust with the medical world. Doctors are by no means God. Some are good and some are bad. But if I’ve learned one thing through this all, you’ve got to take charge of your own health care. Doctors are not going to do it for you.

Although the prognosis is the best we could hope for, bladder cancer tends to come back. It will be something always lurking in the back of my mind for the rest of my father’s life. A worry about the “what if’s” and the gratefulness that it wasn’t too late.

Now we move onto a journey into the unknown and I will have to somehow find peace with it all. I know it is going to take some time to pick up the pieces and put my life back together. But now I know it is possible to overcome some of life’s deepest fears, and that I am surprisingly much stronger than I initially thought.

I am amazed by the power and strength of my spirit to fight and to persevere. And most of all, that I am never truly alone.

0.0000000.000000

Share this:

Like this:

Related

4 comments on “After the Biopsy: The agonizing wait”

Nicole – You are so brave to be able to write all of this down. I’m not sure if I would have been able to do it. I hope it has helped you gather your thoughts. So much of life is so unpredictable. It’s just a matter of how we handle it in the midst of a crisis. I hope your dad is doing better.

I have always kept a journal my entire life. Writing even my most private thoughts no matter how hard they are, is therapeutic. I don’t know if I could have shared this post with my regular blog. Yet with this blog, it is new and only a few people read it so it felt safe. And also my parents don’t know about it! 🙂 Anyway, I am feeling much better. It will be a journey but I am constantly amazed each day how the hard times in life make you that much stronger. 🙂

Thanks Jennifer. I tell you, the last two weeks, I feel like I’ve been beaten to the ground. There were times when I didn’t want to get out of bed. I am so relieved that it is a good prognosis yet bladder cancer tends to reoccur thus this will be a lifelong journey for us.
I sure have learned a lot about myself through this. Thanks for your thoughts. I’ve felt so utterly alone in this all despite all the words and support. Yet each time I get a comment like this, it helps.